"What Do You Mean 'what's Wrong with Her?'": Stigma and the Lives of Families of Children with Disabilities

This study extends the application of modified labeling theory to the experience of courtesy stigma in families of children with disabilities. The study utilizes a mixed methods approach that integrates quantitative analysis of survey data, qualitative analysis of interactive interviews and personal narrative. A survey of 81 mothers of children with disabilities in Florida, USA, is used to test hypotheses related to the impact of perceived stigma on emotional and social outcomes for mothers and children. The author's experience as the mother of a child with cerebral palsy and interactive interviews with seven other mothers with similar experiences are used to contextualize, humanize and help interpret the quantitative findings. Results indicate that controlling for the effects of salient maternal and child characteristics and the daily hassles of caring for a child with a disability (objective burden), maternal perceptions that individuals with disabilities are devalued and discriminated against (stigmatized) by others increases maternal distress (subjective burden). Findings also indicate that children of mothers who perceive high levels of stigma interact less frequently with age peers in the informal settings of homes and neighborhoods.